(UK) Has anyone really been helped by the NHS

[TryingtoLearn]

I was diagnosed Atypical Autism in 2016, still on the never ending waiting list to be seen.

But I am wondering what are other people's experiences? Did getting seen by people actually help?

After 7 years of begging for mental health support, I did get a few sessions with a regular (none ASD) psych. Helped in some ways but sessions ended when I was just only starting to raise serious questions. That crisis team was supposed to transfer me to a long term mental health team but they don't have anything for ASD, only want to give me meds without listening to me.

To me, the mental health services seem to be the biggest endurance test and causing more frustration and disappointments again.

Had anyone actually had anything from the NHS that has helped them be a better person?

What happens when I do get to see the ASD people? Will it be a long term life long project? Will I only get 2 sessions because all the funding has gone so I will then have a whole bigger set of questions to ponder?

 

[Raggamuffin]

When I first had anxiety my company had private healthcare. 2 phone calls, one psychiatric assessment and within 2 weeks I was in therapy.

Many years later, I tried to get therapy through the NHS. A GP appointment, followed by several weeks wait. Then a telephone assessment. After 6 months of waiting I was able to see a therapist - who worked 25 miles away from my house.

I'm on a waiting list for an NHS autism and ADHD assessment. My brother has been waiting for over 2 years for his autism assessment. The place that handles the referrals and assessments was shut from March 2020 through to spring of 2021 due to the pandemic. So their backlog is going to be even greater.

I have called about for private assessments, and much like my private therapy sessions - I could get it all done within weeks.

As for the NHS helping you to become a better person - I think no amount of good advice, therapy or help will benefit someone who isn't willing to change in themselves. I had a bit of a salvation fantasy around therapy when I first attended. I expected miraculous changes, benefits and assistance - but I was left feeling deflated.

It's a bit like being at school - you can have the best teachers, but if the student isn't willing to put in the work, then they won't see the benefits. The same goes for self-help. You have to try hard, push and persevere.

Unfortunately, NHS excessive waiting times don't help - when you're keen to have answers sooner.

I'm still debating whether or not to spend nearly £1200 on 2 private assessments. I'm left asking what I would gain that I haven't already felt from reading about the spectrum and ADHD on forums, in books and sharing experiences with others.

Ed

 

[TryingtoLearn]

My catch is I am willing to put in the work but I have no idea what to do.

Without professional help, I can just fall in a pit of self diagnosing. I've spent my whole life probably on the wrong path. I want to be on the right path this time but I have no idea what it is.

 

[Raggamuffin]

There are a lot of books with regards to autism. One that I'd recommend is written by a therapist who was diagnosed as an adult with Asperger's. As such, the content feels extremely relevant and relatable:

Trauma, Stigma, and Autism: Developing Resilience and Loosening the Grip of Shame by Gordon Gates

This forum is also a good place to start. If you share experiences, struggles and triumphs etc - you will naturally attract responses and advice from others within this community. Whilst the spectrum affects us all with unique challenges, there are also similarities and patterns which can potentially be helped through discussion, reading, therapy and lifestyle changes.

Whilst there's no panacea change or drug that will remove your struggles and discomforts completely - there are many things that can be tried in a bid to make life and emotions feel less erratic.

I think we have to be realistic when it comes to ASD - there's often many co-morbidities which can compound struggles and difficulties. I would say it's best to approach self-help with the mindset that this is a lifelong condition, which can be assisted through changes and coping strategies etc. Remind yourself, that whilst an ASD might seem like a curse at times, it also provides many strengths and abilities that other's will never know.

There'll be times you feel empowered by new knowledge and techniques, but there'll be just as many times when you feel burnt out, or lost and overwhelmed by your struggles etc.

Just remember that this is a friendly and open community on this forum. Share, be open and honest - you will find like minded and helpful souls on here.

Ed

 

[Alexej]

I would suggest that you keep trying with the NHS. In Scotland the NHS seem now to be focussing a bit more on ASC, and some pathways are opening up in my health board area.

The first port of call is the GP. Get them on side and let them work with you to get an assessment. I found my GP very helpful, even when they said that there was nothing more they could suggest through the NHS, and if I knew of a private route follow that one.

Certainly look up the UK Autism groups and see if they offer anything locally to you.

Here are some links
ARGH Home
Home - Awtistiaeth Cymru | Autism Wales | National Autism Team
GAS - Grampian Autistic Society - Serving users across Aberdeen City & Aberdeenshire | Supporting children & adults with Autism Spectrum Conditions & their families
Different minds. One Scotland
Home Page
https://www.youtube.com/user/NationalAutisticSoc

This one is European - included for fun
About EUCAP - EUCAP


BTW - what is atypical autism? that is a new term to me

 

[Thinx]

If you have work or financial means, it's not hard to find ongoing counselling or therapy, outside of the NHS, plus you may be able to locate some via charities with low charges, such as Mind. Finding help that's autism aware is harder, but that somewhat applies to NHS counselling provisions too.

Can you say more about what you mean when you say you want to learn, but don't know where to start? You have a diagnosis, which is a start, what sort of things are on your wish list to learn about? What were the in depth areas you were getting to when your therapy ended? We may be able to help better if we know a bit more.

 

[Streetwise]

My catch is I am willing to put in the work but I have no idea what to do.

Without professional help, I can just fall in a pit of self diagnosing. I've spent my whole life probably on the wrong path. I want to be on the right path this time but I have no idea what it is.

do you need the extremely ironically named welfare benefits? as an official diagnosis is needed for that ,you may get extended CBT if you get an official diagnosis of autistic neurology !

 

[Gift2humanity]

I was diagnosed Atypical Autism in 2016, still on the never ending waiting list to be seen.

But I am wondering what are other people's experiences? Did getting seen by people actually help?

After 7 years of begging for mental health support, I did get a few sessions with a regular (none ASD) psych. Helped in some ways but sessions ended when I was just only starting to raise serious questions. That crisis team was supposed to transfer me to a long term mental health team but they don't have anything for ASD, only want to give me meds without listening to me.

To me, the mental health services seem to be the biggest endurance test and causing more frustration and disappointments again.

Had anyone actually had anything from the NHS that has helped them be a better person?

What happens when I do get to see the ASD people? Will it be a long term life long project? Will I only get 2 sessions because all the funding has gone so I will then have a whole bigger set of questions to ponder?

Didn't being diagnosed on the autistic spectrum feel of some help to you?

My psych nurse and psychiatrist helped me get a re-referral for my autism diagnosis.
I got a post diagnostic interview and signposted to an organisation that runs activity groups on zoom, I am allocated a support worker.